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Thread: Can someone help me understand my diagnosis and symptoms? CSF leak causes Dementia

  1. #11
    New Community Member
    Join Date
    Aug 2010
    Location
    British Columbia, Canada
    Posts
    7

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    You've had an awful time with this, I empathize with your suffering. Been there.

    Ask for a little IV sedation. The procedure hurts no more than the original epidural you had with childbirth but after your experiences over the past few months your anxiety levels are bound to be a lot higher, mine were. You will get a bit of a backache for sure but most people find it to be mild. The blood injected is essentially an induced bruise and bruises ache bit for a few days. My experience was no backache at all. Talk with the anesthesiologist and get him/her to go over all the side effects and what to expect and do over the next few days.

    I'd take it VERY easy for 24 hours after. Lay low, get someone to help you with the baby and spend as much time as possible lying down. For the next couple of weeks continue to baby yourself. No vigorous activity, no bending, twisting or lifting. Your own body has to heal over the leak under the blood patch to fix this thing for good.

    Here's hoping! We are all rooting for you and hope you do well. Post on your progress!!

  2. #12

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    Do you know if anyone can be in the room with me during the procedure (like my husband)? or does it have to be a sterile environment?

  3. #13

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    You will need to ask if your husband can be with you. Some places do allow it. We were with my son for hist first patch since it was done in ER, but the second one was in a sterile environment and we were not allowed to be with him :(
    Good luck today!!!
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  4. #14

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    Thank you so much! Ill let everyone know how it goes : )

  5. #15

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    So far its been about 3 days, patch seems to have worked. I had a lot of back pain from the procedure and some odd after symptoms. I had an increase in vision problems and still do (increase). About an hour after my procedure my head kept bobbling like it was too heavy. As well still have the tingling in my hands and legs. I also had no head aches after the procedure at all but then a return in head aches last night. I am hoping this doesn't mean the patch failed, I havent been doing much but laying down and sleeping the last few days. Does all of this sound normal for after blood patches?

  6. #16

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    Thanks for the update. Do you know how much blood was used? Sorry about the increase in vision problems - even though there are many different patch experiences, I've read experiences like yours (bobble head, tingling ... maybe not the vision symptoms increasing). The blood in the patch is only around for a few days and then it would need your newly-healing dura to hold in the CSF. Please try to rest/laydown .... it is very important for healing for some patients (even though not recommended by many doctors). And remember, patches can be repeated!
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  7. #17

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    Thank you. I have been resting lots! Vision problems still there, but reduced alot. However my horrible head aches came back full blown. But they arent constant, just a few hours here and there.

  8. #18

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    Quote Originally Posted by Mikau View Post
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    Thank you. I have been resting lots! Vision problems still there, but reduced alot. However my horrible head aches came back full blown. But they arent constant, just a few hours here and there.
    I am glad the headaches only last a few hours. I am curious how they go away after a few hours. Do you need to lie down for a while? or they just go away on their own? After leaking for a while it can take time for your body to regulate CSF production and you could feel a bit high pressure and low pressure at times.
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  9. #19

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    The first time my head ache returned it only lasted about 30 seconds, I was sitting up. The second time which was later, the next day began in the morning and lasted for hours and hours. I called the doctor and she suggested resting some more which I did and it went away. It later came back as I was riding in the car on our way to Thanks giving dinner and ended a few hours later. I didn't rest that time it just went away on its own. Im not sure if I blew the patch or if its just the fluid settling like you said. My follow up is in a few weeks so I will know for sure then. So far all of my symptoms have gone- even the vision, excluding the slow motion trailer when something moves. So I am hoping they don't pop up again, this has been the longest without visual issues and even the other sensory issues. So it may have worked : )

  10. #20

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    Sounds good so far! When Rob leaked, the ONLY thing that helped his headache was lying down. After he was patched, his headaches could get relief by being still. Ever since he leaked, car rides can still bring on a headache for him ... not sure why ... but they only last a short time then go away. Good luck!
    Jeanne
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

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